I’m going to take a moment to describe an everyday moment in the life of someone living with chronic illness or pain, aka #spoonies.

I don’t want to write this because I still have internalized ableism and the accompanying shame.

Which is why I’m making myself write it.

1/x

I’ve done everything I’ve done so far today in terms of reading, researching, and writing, lying in bed on my right side.

It’s my only pain-free position, and lying down doesn’t trigger my POTS and the autonomic nervous system deregulatory cascade that comes with it.

2/x

POTS is a form of autonomic nervous system dysregulation. It stands for Postural Orthostatic Tachycardia Syndrome.
My heart rate goes from 60 to 140 if I stand up. My blood pressure, however, does not increase. So my heart races but my brain does not get adequate blood flow.

3/x

When the rest of my nervous system realizes my heart is racing, it kicks into fight-or-flight because it thinks I’m running from a predator.
Blood leaves my extremities, which go numb/tingle, for my gut and vital organs. Adrenaline surges. I get diaphoretic (cold sweat). Etc.
4/x

Because my BP hasn’t adjusted and blood has left my extremities, I can’t think clearly (aka “brain fog”). I often lose my peripheral vision (and, rarely, faint). During all this, I do “self-talk” to reassure my mind I’m not actually in danger.

All because I simply stood up.

5/x

Now, I haven’t had my diagnostic MRI yet because the pandemic hit right after my doctor ordered it, but I also have something going on with my spine that is posturally mediated.

After anywhere from 15 minutes to one hour after standing, the spinal pain starts.

6/x

I don’t want to talk about pain because it’s boring. But it gets worse the longer I sit up or stand up. Pain scales are pretty useless when you live with chronic pain interspersed with acute episodes, but I know I need medicine when I notice I’m breathing like I’m in labor.

7/x

The everyday moment:

As a single mom, I need to feed my daughter full meals. (As a post-menopausal woman, I don’t eat a lot. Our metabolisms REALLY change.)

I’m lying here thinking, “I was planning on writing tonight, but I need to cook dinner. I won’t be able to do both.”

8/x

That’s it. That’s the moment.

But it’s a moment fully-abled people take for granted and choice they don’t have to make.

I literally—physically and mentally—am not be able both to stand up long enough to cook AND to have the mental clarity and freedom from pain to work.

9/x

The privilege of being able-bodied isn’t just about not needing access ramps or different accommodations to be mobile or able otherwise to function.

It’s also about not having to choose between equally necessary activities of life and love. Every day.

Every. Single. Day.

10/10

P.S. To all those reading this who face similar daily choices and who might even be reading this on their phone while lying down:

I see you.
You matter.
You are not crazy.
You are not lazy.
You are not alone.
We are our greatest strength.

#EDS #POTS #MCAS

@bennessb
@Asher_Wolf
@H2OhTwist
@DrEReinhold
@jenbrea
Thank you all for all you do to educate others and increase awareness.
This thread is for you